Search

Background: The district nurse is identified as a keyworker in community based palliative care. However, a dearth of research exists on trainees' views and understanding of adopting the role upon qualification. Aims: The aim of this study was to explore the understanding and perceptions of district nurse trainees in relation to the palliative care key worker role. Methods: Data was gathered via online semi-structured interviews (n=10) and the results were analysed using a thematic model. Findings: The four evolving themes included: understanding of the palliative care key worker role scope and function; the level of preparation for the role; a juggling act and embedding the role in practice. Conclusion: The themes highlighted various drivers and barriers that reflect a degree of incongruence with policy and practice. Recommendations to standardise the palliative care key worker role, underpinned by formal preparation and clearly defined responsibilities may enhance future development and implementation of the role. [ABSTRACT FROM AUTHOR]

Background: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. Methods: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. Results: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. Conclusions: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society. [ABSTRACT FROM AUTHOR]

Long-term care facilities are increasingly important places for palliative and end-of-life care provision in Japan. While the importance of culture has been noted for palliative and end-of-life care, an exploration of its influence on care provision in long-term care settings has received little direct attention in Japan. Exploring staff views and beliefs in palliative and end-of-life care in these settings can potentially enhance our understanding of culturally oriented care and facilitate the development of tailored and more effective support practices. This study aimed to explore the cultural views and beliefs regarding palliative and end-of-life care among the staff in Japanese long-term care facilities. A qualitative exploratory study was conducted using focus groups with facility staff (N = 71) and semi-structured interviews with facility managers (N = 10) in the Kanto region of Japan. Thematic analysis was conducted according to Braun and Clarke's approach. The findings are presented in five key themes: 'Changes in society's and family's end-of-life perspectives', 'Values and beliefs regarding death and dying', 'Anxiety and regret', 'Tensions in doing the right thing' and 'Ways of alleviating pressure'. The findings indicate that the provision of palliative and end-of-life care is underpinned by cultural nuances that influence care providers' approach and delivery. Recognising and understanding the cultural beliefs of staff around death, dying and end-of-life care are important in meeting the needs of residents. Palliative care education for staff in these settings should include cultural considerations that reflect changing societal views on death and dying. [ABSTRACT FROM AUTHOR]

Background: Healthcare assistants working in hospice at home settings have a pivotal role in supporting people dying at home and their family caregivers. Some healthcare assistants are working alone in patients' homes, which magnifies some of the issues reported for those working closely with other team members. There is a dearth of evidence in terms of education, training and support needs for healthcare assistants when working alone. Aim: To explore the role of newly employed lone working healthcare assistants delivering palliative care in the community, and their support and educational needs. Design: Qualitative exploratory study using semi-structured interviews. Setting/participants: Healthcare assistants (n = 16) employed less than 12 months by a national non-profit hospice and palliative care provider located across the UK. Results: Analysis of interviews identified three main themes: (1) Healthcare assistants have a unique and complex role catering for holistic needs of patients and their family caregivers in the home environment; (2) preparation for the complex role requires focus on experiential learning and specific training to support holistic care provision; (3) lone workers experience loneliness and isolation and identify peer support as a key intervention to support their wellbeing. Conclusions: Given the complexities of their role within community palliative care teams, there are key learning points in relation to healthcare assistant preparation. Education and support networks should be prioritised to reduce isolation and support ongoing learning and development of newly employed healthcare assistants; all of which is vital to ensure safety and quality of care for the growing number of people they support in the community. [ABSTRACT FROM AUTHOR]

Pre-loss grief can be experienced by relatives before impending death; however, limited understanding exists about the impact of pre-loss grief on bereavement. This systematic review aimed to synthesize qualitative research evidence reporting adults' experiences of pre-loss grief within cancer care. Thirteen studies were selected, and three key themes identified. Findings indicate that relatives transitioned through lived experiences during end-stage cancer, and that meanings attached to these experiences influenced how they experienced pre-loss grief. Limited formal support was identified to navigate these experiences; however, context was seen as important, and skilled healthcare practitioners and physical environment were key to facilitating preparedness. [ABSTRACT FROM AUTHOR]

Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the views of the parents have received scant attention. This qualitative study, using reflexive thematic analysis, aimed to explore parents' experience of the initiation of their child's advance care planning discussions, to help provide an understanding to inform future practice. Single interviews were undertaken with 17 non-bereaved and bereaved parents. Parents reported they had engaged with future thinking but needed time before initiating this with clinicians. They identified the need for a trusted professional and time for private, thorough, non-judgemental discussion without feeling clinicians were 'giving up'. Parents reported that advance care planning discussions were not always aligned to the dynamics of family life. They felt that health professionals were responsible for initiating advance planning conversations according to the families' individual requirements. There was an apparent lack of standardised protocols to assist paediatric advance care planning discussion initiation.Conclusion: Initiating advance care planning is a complicated process that needs to be tailored to the specific parent and child situation. Health professionals need to appreciate that parents are key contributors to initiate engagement with advance care planning discussions but that they also require support and care, recognising this may facilitate the building of trust, identified as a key corner stone, of paediatric advance care planning initiation and engagement. What is Known: • In paediatric palliative care, parents are challenged with wanting to sustain hope whilst thinking and planning for their child's end of life. Paediatric advance care planning discussions are often delayed or avoided and triggered by physical deterioration. What is New: • Previous relationship with HCP not essential but parental trust of the HCP is fundamental to Paediatric advance care planning initiation engagement. To build mutual trust health professionals' approach needs to be professional, respectful and empathetic to the parent and child's situation. • Subtle paediatric advance care planning parent initiation preparation by HCP is often unnoticed by parents but may be the crux of empowering parents to initiate advance care planning conversations themselves as they need to feel a sense of regaining control before planning ahead. [ABSTRACT FROM AUTHOR]

Background: Moving palliative care from a solely clinical focus to a more population based and community orientated approach is the hallmark of a much advocated public health approach to palliative care. Young adults are a vital cohort of the public, yet their understanding of palliative care has not been investigated. This study aimed to explore young adults' understanding of palliative care and identify factors that influence their engagement. Methods: A purposive sample of young adults (n = 24) aged 18–29 years were recruited from one UK University. Semi-structured interviews were undertaken face to face or via telephone or Skype between November 2017 and February 2018. Thematic analysis using a framework approach and underpinned by a socioecological perspective was used to analyse the interviews. Results: Three thematic categories were identified relating to intrapersonal and interpersonal influences, cultural and social influences and organisational and public policy influences. Palliative care was understood as supportive comfort care, delivered in the absence of cure, associated with the end of life and specifically focused on death and dying. Negative attitudes related to the context of care, which represented a static and hopeless situation. Whilst some reported positive attitudes, potential engagement was seen to be governed by a lack of knowledge and protective cultural norms. In terms of demonstrating readiness to engage with palliative care, participants requested clear information and suggested a normalising of palliative care through the education system. Conclusion: Young adults in this study were ready to find out more about palliative care and identified social media as a platform upon which to engage this population. However, their perception of a society that views palliative care as a subject for those directly affected, creates a barrier to engagement. This study identified the ingredients of a public health message and mediums for disseminating the message. However, findings also suggest that a cultural shift is required to recognise the potential of engaging young adults in health issues that cross the life span, empowering them not only as individuals but as vital members of community and society. [ABSTRACT FROM AUTHOR]

Background: Most people spend their last year of life at home, with many wishing to die there, but patients may need access to care after hours. Out-of-hours palliative care is delivered by multi-disciplinary teams including Health Care Assistants (HCA). However, little is known about the role, contribution and impact Health Care Assistants have on out-of-hours palliative care services. The aim of this study is to examine the Health Care Assistant role, contribution and impact on service delivery and patient care in out-of-hours community palliative care provided by hospice organisations. Methods and analysis: A mixed methods exploratory study consisting of four phases. Phase one involves a scoping review to systematically map and identify gaps in policy and literature on the HCA role in out-of-hours palliative care. In phase two, all United Kingdom hospices will be invited to participate in an online census to enable the development of a typology of out-of-hours services and the contribution of the Health Care Assistant. During phase three organisational case studies representing different service types will collect information from Health Care Assistants, patients, caregivers and service managers to gather qualitative and quantitative data about out-of-hours service provision and the Health Care Assistant role. Finally, phase four will synthesize and refine results through online focus groups. Ethics and dissemination: Ethical approval has been obtained for phase two through Ulster University Research Governance Filter Committee, Nursing and Health Research. Findings will be disseminated through practitioner and/or research journals, conferences, and social media. [ABSTRACT FROM AUTHOR]

Background: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. Aim: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. Design: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. Setting/participants: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. Results: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. Conclusion: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this. [ABSTRACT FROM AUTHOR]

The article presents a study that explores the public perceptions of palliative care and identify strategies to raise awareness. The study included semi-structured telephone interviews with members of the public who volunteered to participate in the study. It suggests that most participants had a general knowledge of palliative care, largely influenced by their own personal experience.

Aim To explore the unregistered healthcare worker's role and influence on student nurses' clinical learning experience. Background Across the developed world, the role of the unregistered worker is exceeding its traditional boundaries. Evidence suggests that this includes the day-to-day mentoring of pre-registration student nurses. However, no research to date has explored reasons as to why this is occurring, what types of tasks are taught, and the consequence of this. Design A sequential exploratory mixed method research design was adopted. Method Reporting on the final qualitative phase of a mixed method sequential research study, semi-structured interviews were undertaken with 59 unregistered healthcare workers across four hospitals in Northern Ireland. Transcriptions were analysed using a content analysis approach; all data were collected in 2010. Results Findings show the diversity of the unregistered healthcare workers' roles and confirm that they play a major part in the education of student nurses with regards to basic, clinical, and non-clinical tasks, with and without the approval of registered staff. However, their involvement did not reflect their levels of expertise as evidenced by certified training. Their participation was justified based on mentor unavailability, their closeness to the student and the patient. While some did raise concerns, they recommended that these workers be formally involved in nurse education. Conclusion Mechanisms of workforce planning need to pay particular attention to the expanding role of unregistered healthcare workers as 'role drift' has the potential to alter patterns of work and affect current educational approaches impacting on the acquisition of clinical skills. Further research is recommended in this domain. [ABSTRACT FROM AUTHOR]

Social workers are key professionals in assessing social care need and providing support. However, needs in the palliative care stage of chronic illness are not always well managed. In this study, we set out to examine the social worker's role in the delivery of palliative care to clients with Parkinson's disease (PD). Two focus groups and one individual interview were undertaken with thirteen social workers with experience of working with clients with PD in community and hospice settings. Differing perceptions of palliative care emerged: from a holistic approach to specialist care near the end of life. Negative associations of palliative care were identified. Other barriers also exist such as a lack of knowledge and experience of PD and a lack of resources, that hinder the delivery of palliative care to clients with chronic conditions. Different interpretations of palliative care affect its delivery to clients with long-term chronic conditions. Very few clients with PD are referred to specialist palliative care specifically for management of their symptoms, which must prevent holistic care. Social workers have an important, yet underdeveloped, role in identifying and addressing palliative care needs. Policies and procedures should be clarified regarding prioritisation and access for clients with chronic long-term conditions to appropriate palliative care. [ABSTRACT FROM AUTHOR]

Aim: To explore district nurses' beliefs regarding referral of a patient receiving palliative care for physiotherapy. Method: Three focus groups, guided by the Theory of Planned Behaviour, were undertaken with a purposive sample of 16 district nurses. All were audio-recorded, transcribed, and subject to content analysis. Results: Nine beliefs were identified as influencing referral decisions, the majority of which were negative, such as the belief that physiotherapists lack palliative care skills and could foster false hope. Additional barriers to referral included a lack of contact and communication with physiotherapists, poor knowledge or experience of physiotherapy, unsuitable referral systems, and poor availability of services. Conclusion: These findings help to explain why so few patients receiving palliative care access rehabilitation services. To ensure that patients have appropriate access to palliative rehabilitation, there needs to be consideration of how the identified barriers can be overcome. [ABSTRACT FROM AUTHOR]

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson’s Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n = 17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services. [ABSTRACT FROM PUBLISHER]

Background and objectives: The need to provide an empathic response to the care of people with dementia has long been advocated. Virtual reality‐based programmes continue to gain momentum across health sectors, becoming an innovative tool that provides staff with the opportunity to experience a dementia‐like experience within a relatively short time frame. The purpose of this study is to explore the impact of an interactive training experience on moral, emotive, behavioural and cognitive elements of empathy. Research design and methods: A qualitative exploratory design was adopted employing purposive sampling to identify participants, aged over 18 years, who participated in the Virtual Dementia Tour (VDT®) programme. Interviews were conducted over a two‐month period, and qualitative thematic analysis was used to analyse the data. Results: The four components (moral, emotive, behavioural and cognitive) of empathy were reflected in findings. Overall the interactive training programme was perceived as useful, and emotionally, it provided an opportunity to "imagine what it is to live with dementia," enabling a cognitive, moral and behavioural reflection to occur, enhancing the empathic state. Discussion: In this study, the VDT® provides a different way of learning, with participants reporting the emergence of an empathic response. Results suggest that the emotional response laid the foundations to the behavioural or cognitive (objective and subjective) reaction which was underpinned by a moral reaction. Implications for practice: Virtual reality programmes are one step in the process for healthcare professionals caring empathetically for people with dementia; however, further research is required. [ABSTRACT FROM AUTHOR]